Ankylosing Spondylitis and Rheumatoid Arthritis
The Family Tree of Rheumatic Diseases
Rheumatoid Arthritis is a strange disease which is difficult for science to explain. It is not surprising that there are several other rheumatic diseases which are akin to Rheumatoid Arthritis. Today, I am introducing you to one of the cousin’s of Rheumatoid Arthritis, Ankylosing Spondylitis.
What is Ankylosing spondylitis?
Ankylosing spondylitis is an autoimmune disease which results in chronic inflammation of the spine and sacroiliac joints. Ankylosing spondylitis (AS) produces progressive stiffening of the spine. Eventually, AS even leads to fusing of vertebrae and a bent posture.
What’s a Spondarthropathy
Ankylosing spondylitis is an inflammatory arthritis that is in a category called spondarthropathy. Spondarthropathies mimic Rheumatoid Arthritis in several ways. However, they are generally seronegative and positive for a gene marker called HLA-B27. Other spondarthropathies include Crohn’s disease, reactive arthritis, and psoriasis.
Since AS is a systemic rheumatic disease, it can also affect the entire body. Often, this includes eyes, heart, lungs, and other joints. Commonly involved are knees, ankles, and feet.
How is Ankylosing Spondylitis like Rheumatoid Arthritis?
- morning stiffness
- fatigue, malaise, nausea
- genetically influenced rheumatic disease
- typical pattern of flares and remissions
- outcome of the disease varies widely among individuals
- treated with these medications: NSAIDs, DMARDs, steroids, and Biologics
- often difficult to aquire a diagnosis
How is Ankylosing Spondylitis different from Rheumatoid Arthritis?
- peak onset age is 20 to 30 years old, rather than 30 to 40 for RA
- AS is 3 times more common in men; RA
is 3 times more common in women - AS primarily involves the axial skeleton; RA
less frequently does - AS usually inflames the enthesis (where tendon inserts into bone); RA usually inflames the synovium (membrane that lines a joint)
- AS does not appear to influence mortality as much as RA does statistically (likely due to heart disease issue)
Bottom line about RA and AS
Like Rheumatoid Arthritis, Ankylosing spondylitis is an invisible illness which disrupts lives. The entire course of a life can be changed by chronic pain, disability, and necessary medical treatments.
Read more:
- For more information on medications mentioned in this article, read Rheumatoid Arthritis Requires Disease Treatment and Symptom Treatment
- RA education: The Difference Between Osteoarthtitis and Rheumatoid Arthritis
- Encouragement to live with RA: Be Your Own Counselor with RA
very right symptoms…thanks for discussing this one here.Will try to take a few tips from here.
Great blog post. I have never heard of this illness before, thanks for posting this great info. I really enjoyed reading your blog and learning about your RA. With your positive outlook on life, I feel that your blog would be a great addition to Wellsphere’s HealthBlogger Network (HBN). The HBN has over 2,600 bloggers that share a common goal to share their knowledge with others, which enables Wellsphere to provide information that is personal and relevant to over 6 million visitors a month.
Feel free to visit our Health Blogger Network at http://www.wellsphere.com/health-blogger, where you can apply to join. Or just email me at hua [at] wellsphere [dot] com.
Have a great day!
Hua
Director of Blogger Networks
Thank you so much for talking about AS and showing the similarities and differences between RA and AS, it has really taught me a lot. In my research I have learned that AS is just as deadly as RA because with AS the joints in your rib cage fuse which creates a lack of ability to breath. Additionally AS can affect your heart and lead to premature death. As always with both RA and AS we have to consider the toxic medications that our liver and kidneys process constantly which lead to premature death also. It is so sad that those of us with RA and RA cousins have to fear that we will die prematurely because of luck that we developed this condition. Truly unfortunate. I thank G-d for every day I am given no matter how much I creak and crack like an old wooden floor.
Great points!
KS: I love your spirit. That will help you to not only keep going, but also be a blessing to others.
Thank you Kelly! 🙂
Rheumatoid Arthritis is very painful and though these symptoms are very correct they are not always occurrant…the symptoms actually differ from person to another.
I have lived with pain in my joints (neck, back, hips, knees and ribcage) the majority of my adult life, and was finally diagnosed with AS last year at age 46. I have taken anti-inflammatories, methotrexate, and am now injecting myself with Enbrel 50mg each week (biologic). Since my diagnosis my health has deteriorated quickly. I live in New York City and commute to work by train every day, and in the past year, I have fallen quite a few times because my left knee buckles. I am currently using a cane to maintain stability. I don’t know how much more I can take, I am in so much pain, and have absolutely no quality of life. Any suggestions?
Hi dianacorazon,
I am Marian, otherwise known as whitetiger52. I am feeling your pain. I would like to suggest small animals to hold and love. I have guinea pigs, they are like little puppies that do not grow big. They are always there for you, when you are particularly feeling down and painful, they sense it. As do most animals. I also have a cat. She lays on my chest when i am on a “flare” (dead tired, burning joints,depressed,tearful, cannot make sense of anything, not able to move around and be productive to my family). I love kissing little animals on their soft furry faces just makes everything better. I have RA, (suspect AS)Fibromyalgia,asthma,PTSD, GAD,GERD,panic disorder,severe clinical depression, degenerative joint disease, and a very weird sense of humor!)
Let me know what you think. =:}
Hi Diana,
Look into Honey Bee Venom Stings. I have this disease and am able to move around without any prescription drugs. Please give this a shot. At this moment I am not sure if I will have to do the stings for the rest of my life or just for a few more months. I have been doing it for 10 weeks so far. It took 6-7 weeks before it started to work on me. I feel like I should share my story and start responding to everyone who has this disease. I see so many people in pain like I was and I feel bad if I do not share my healing remedy.
Diana,
I am so sorry for you. Have you discussed this with your dr? Maybe there is more they can do for you; but I also cannot imagine having to ride a train in your condition! I hope you can get enough help so that you can continue the life you have, but sometimes, chronic illness like this leads to major changes like career and location. I would suggest you find support to help you to deal with these decisions – maybe an Arthritis Foundation support group or a friend or counselor – because this is very hard to handle alone. I will pray for you.
Diana:
I am so sorry to hear of your struggle with AS. I also struggle with AS and I completely understand the embarrassment of falling down. My husband keeps saying we have to move because I keep falling down the stairs. I found that taking muscle relaxants regularly helped with the falling. For back pain I also use a TENS unit from EMPI Recovery Sciences. I would also talk to your doctor and start filing for disability ASAP. Medical disability through the social security office takes over a year to go completely through the process. Since it is very lengthy I would suggest starting it now, knowing that you have options. Additionally I would if possible look for a job closer to home. With AS it is always about making accomidations. I also have found that physical therapy helps a whole lot. Because it is difficult for you to commute you may even be able to get in home physical therapy.
Sometimes it is so hard to keep having faith and keep looking forward but we have no choice. Keep your head up, we are fighters!!
Talk to your doctor about:
a. a brace for your knees
b. medical disability
c. TENS unit from EMPI recovery sciences
d. muscle relaxants
e. possibly a neuro consultation bc u r falling
f. physical therapy prefer in home
Also:
a. get medical disability forms and start reviewing (you can find them online easily thanks to google)
b. look for jobs closer to home with little or no commute
c. hang in there!!
I read this blog every time there is a new post so if you need me post a comment and I’ll response or Kelly will let me know.
Also familiarize yourself with resources in your area through the arthritis foundation (they have support groups all over the world) additionally I would suggest reading up on spondylitis.org to stay current on the happenings and research for us with AS. A lot of time Embrel alone isnt enough, people still need muscle relaxants, sleeping pills (very helpful for women with AS) and sometimes pain pills. Don’t take no for an answer, be your own advocate and make your dr listen or get a new one asap. You cannot keep living like this and your dr cannot think this is ok either and if he/she does you need to fire your dr and get a new one because he/she is heartless.
Sending lots of support and encouragement your way!
Karaleigh
I felt alone with this AS illness until I read your post.
You have given me so much information, and I wanted to thank you for the information and words of encouragement. You totally relate to how I feel because you have it too! It is so embarrassing to fall down in the street, it’s difficult for me to get up, especially when I’m alone. When commuting, people are in such a rush to get to work, just a slight brush up against me is all it takes to knock me down. People on the train see me with a cane, and they’re not even courteous to give a seat to a handicapped person, perhaps it’s a New York thing. I think the worst part of my problem is that I was diagnosed too late. You are absolutely right, I need to be proactive, because my dr. is very passive about my treatment, and he is not the one in pain, I am. I have an appointment coming up with him the first week of November, if he doesn’t listen to me, I will change drs. I don’t get much sleep because I am in pain most of the time, so the first thing on my agenda for my next dr. appt. will be sleep medication. Your suggestion about disability is a good one, I haven’t given any thought about disability, didn’t think I qualified. I have researched my employee benefits, and I work in a large law firm, so I have good benefits. If I go out on disability, my firm has long term disability insurance, which kicks in within 30-60 days, and pays me until I’m at retirement age. I will only go out as a last resort, I have worked all my life, so not working would be devastating for me. I will keep you posted.
Thank you so much,
Diana
Diana; Hi There! I don’t know how it works in N.Y. but here in Viva Lost Vegas, NV. my Dr. signed a form for me to take to the DMV and I got a Handicap placard for my truck. I just recently found out that anyone who has the placard or plates is also eligible for Paratransit Transpotation. Which means that you call the paratransit company 24hrs. in advance and give them your schedule and they will pick-up and drop off at your destination. I just thought it may be something for you to look into to ease your transportation a little. God’s Blessings! :rose:
I’ve had PsA, CPPD, and OA for about 15+ years. Recently I’ve have some lower back and cervical issues that cause me to think that I may have AK. Will run this by my Rheumatologist next month when I see him.
Over the years I’ve managed because I’ve gradually shifted to working out of my home. I still have to travel on business from time to time, but I’m able to deal with it. Working at home, however, has allowed me a chance to stagger my hours and fit them around how my body is feeling that day. It’s been a great help not to have to worry about getting dressed and made up and putting on the right face in the office. It took so much stress off me. I don’t even want to think what it would be like to have to go into an office 5-6 days a week.
If there’s any way you can get your employer to let you work a few days from home,by all means, do.
Kelly,
thanks for the information. I had never even heard of this. I had talked to the doctor and my HLA-B27 was high so he thinks it might be AS. I had to have a pelvic and lumbar spine xray today. I should know more when the doc gets the results from that.
Sue
Hey Sue!
Your doc is on the ball to run the test. I believe other spondarthropathies could be considered too, such as PA. Sometimes seronegative RA is re-diagnosed as PA when rashes show up years later. We are still very early in understanding these “arthritis” diseases. Did you have a negative anti-CCP? Anyway, the answers don’t give as much comfort as we want all the time. Either way, you will probably need treatment & support. And if it is AS, I’ll put you in touch w/my sweet friend, too.
Kelly, everything came back negative and my xrays were fine. The RA doc did not feel I need to see him anymore and I should see an orthopedic doctor.
I have been seeing 2 ortho doctors. One suggested nerve testing. I am having nerve testing done on the 6th. The other ortho doc said I need surgery. I have Dequervain’s tenosynovitis. Have you heard of that. It began in one hand, now it is in both. I will know if I really need the surgery after the nerve testing is done.
During this whole break I feel like I have been on so many appointments. I am still going to check your website alot because I still feel like I have RA symptoms. My hands hurt daily. Maybe the surgery will make everything ok.
Sue
Hi, Sue. Sorry no clear answer yet. :-/ Unfortunately, the diagnosis process often takes awhile…RA or no RA. RA does begin this way sometimes (tenosynovitis), but until the docs are sure what it is, disease treatment is not an option. Did you play a musical instrument or anything that could have caused it?
Hopefully the surgery will resolve this and you’ll be fine. The nerve testing can be painful sometimes. Ask them what to expect. Let me know when you plan the surgery.
Thanks Kelly,
I go for the nerve test tomorrow…..fun! I will know soon about the surgery.
I will keep you posted…
I hope all is well with you!
Sue
p.s I did play the drums….I was more of a sporty kind of girl….track, softball, cheerleading, and soccer….hence the three knee surgeries….
sue
Hey Sue- I read your comments and wanted to reply to you. So I wrote a message, yet posted it wrong. So it will go to everyone. But look for it. I believe you have FM and do not need surgery. So check out my posting. Basicially I have AS and started having hands and toe problems like you. My doctor tested me and I have FM- Fibromyalgia. So please go to a Rheumatologists before you have the surgery just to be sure it’s not something else.
Before getting dignosed with AS, I had such bad knee pain (along with back pain and so forth). The doctor told me I had torn a ligament in my knee and did surgery. My rhemtaloogists- 5 years later when I went to one and got dignosed with AS, said it could have been the AS and not a torn ligament but the doctors didn’t know any better. So check it out first. I would just hate for you to suffer through a surgery if once it’s done and you heal…the pain come back. You know? So I’m on Lyrica and it really helps Sue. So check it out and good luck to you!!!
I am a 52 year old male with AS and Fibromyalgia diagnosed 20 years ago. It started when I was in college but was afraid to admit it for years because I had watched my father suffer with it my whole life. Nothing terrified me more than AS. Dad required morphine, had was completely fused in the spine, rib cage and hips. He could not work after age 24 but had military disability benefits. I have had problems most everywhere it usually goes and a few less common issues. Pain never stops and I have all the classic symptoms. Here is what I have learned from watching my father fight it my whole life and from fighting it myself all these years. I hope this helps someone.
1. The Churchill principle is the most important: Never, never, never, never, never give up!! Actually you will give up thousands of times; just don’t stay there. You cannot let the arthritis, pain and malaise win! It may slow you down, but you can never, ever let it stop you! Never!
2. You can tolerate way more pain than you think – and keep going. Do all you can to control pain, but don’t let it stop you from living your life. My father would have root canals with no extra pain meds because the AS hurt worse. Pain that used to send me running for the big gun meds is a part of my daily life while I run a successful small business.
3. Pain is major stress and it never goes away, so you will face clinical depression from the depletion of neurotransmitters. You need to be on antidepressants. (Hint- Wellbutrin does not make you drowsy, lose libido or gain weight so I suggest you ask for it first.) The principle is that you have to have a full court press approach instead of focusing just on the arthritis- keep weight down, lower blood pressure, check hormones (meds screwed mine up), take vitamins, take fish oil, eat right, get sleep test (we have higher incidence of sleep problems), etc. If you are not employed, you still have a full time job- getting better- so work it like a job.
4. Keep moving. Keep stretching. Get out of bed. Exercise- whatever you can do. Go to the store. Never miss major family events. You will hurt like hell tomorrow, but are still living your life. Sex will cause pain to start with but the endorphins are better than anything on the market. You need it and your spouse needs it. Start it even when you don’t feel like and enjoy the pleasure and relief. You will hurt worse tomorrow but you need the exercise and movement anyway.
5. Explain to those close to you that the frowns, sighs and grimaces don’t mean you are mad or upset; they just mean you hurt.
6. Stress=more pain. Deal with what causes your stress aggressively.
7. Many meds will put you in a perpetual fog- it is not worth it! Take as little as you can get away with, especially during the day. Caffeine is a pain killer too. Prefer meds that don’t cause the fog. Limit the others as much as you can.
8. The people around you don’t understand what you are dealing with. How could they? That doesn’t mean they don’t love you and it does not give you an excuse to quit. Searching for someone to understand and empathize is a frustrating largely wasted effort. We are driven to do this early on, but you can wean yourself. On the other hand, I always recommend prayer- if you are so inclined.
9. Skip the pity parties. No one else wants to go there, they waste energy you don’t have and you can rise above the defeatism. You will be tempted all the time- force your mind to something else. (If relevant to you- blaming God is a waste too. If you believe enough to blame, you believe enough to thank. Start with thanking and you will never get to blaming.)
10. Stay productive as long as you can. My doc signed off on the disability papers and that was 15 years ago. I almost went there and I know it will get me eventually, but I will only go there kicking and screaming. Stay productive. You need the pain distraction, the sense you contribute and the money to pay for treatment. Took me a long time and a lot of effort but I make 6 figures from a home based business. And it’s not just work- load the dishwasher, take out the trash if you have to drag it, keep up with your family as much as you can. Turn off the TV and do something. Make a difference as much as you can. The more you focus on others, the less you are focused on your own pain.
11. Alcohol is not a pain medicine. Trust me- don’t go there.
12. You don’t have to be bitter and grouchy. My father was often curt and angry when he was younger but he learned to deal with unbelievable pain and still have a genuine smile. His eyes were always kind and his children, grandchildren and great grandchildren loved him passionately. He somehow managed to overcome it all-pain, disfigurement, lost dreams- with grace and dignity. I don’t know exactly how he did it since I am not the man he was, but I know it can be done. Part of it, maybe most of it, was a deep and honest faith.
Hi Jerry.
You are amazing. You tell it exactly as it is. I am 48 and diagnosed with AS five years ago after many years of feeling ill and suffering pain. Misdiagnosed a few times and MRI result overlooked by GP for eighteen months! Rheumo said that by then damage had been done, with some fusing in lower back and sacroiliac joints. On Humira now and slowly feeling benefit. Depression seems to be worst thing alongside the pain.
I think your attitude is amazing and I will think about you coping when I feel down.
Thank you.
Sheena x
This part is for Sue and her hand problems. WAIT ON THE SURGERY!!! It sounds like you have FM- Fibromyalgia. It’s in the hands and toes and doctors who aren’t familiar, will think surgery. Lyrica is wonderful!! I have AS and found this site when trying to see the difference between AS and RA. Last year I starting having problems with the hands and toes. The doctor told me I had AS with the FM. So check it out.
For everyone else- I’ve enjoyed reading these post. I’ve been struggling for 4 years with AS. It hit me hard and took over my life. Put me in a wheelchair until we got the meds rights. I’m 40, a women (and it’s rarer in women) and never been married. So I have had to do this on my own. I had to move in with my parents while figuring it all out. It started in my legs and so severe that walking is extremely painful and difficult. It’s also something to know- this is heiratary. My father has it and was recently diagnosed. So if you have children, have them get the blood test done so that they can get treated early! As the others have posted, the sooner treatment is started- the better!! My legs are the worst, but now it’s spread to everywhere, so I didn’t get to it early enough and now, every part of my body hurts so bad. To those with problems sleeping- try taking 2 Baclofen at bed time. It’s a VERY strong muscle relaxer that helps you fall asleep and ease the pain. With this disease- AS- it’s all about managing. Manage the pain, manage the symptoms and manage your routine. I suggest finding a pain pill that works for you and keeping it in your system at all times. Constant lower doses, is better than taking higher doses once the pain comes on. If you wait until you are in pain, you have to wait for it to start working and by that time, your pain is so severe you need more. So just keeping it in your system at all times, is much better.
Lastly- one of the problems with AS, is the nerve can get effected. So try Neurotin. It’s a pain killer for the nerves and it makes a HUGE difference. And if you try Simponi. I was so excited about a new drug since I’ve tried them all. I got ahold of it in May and gave it 3 months. I couldn’t WAIT for those 3 months to be over cause it didn’t work at all!!!! I was cripple by September and went back to Humeria with Methatrax. But good luck to you, if you try it. My DR said none of her AS patients had any luck with it. So maybe it’s good only for RA.
Thank you guys for your posting. Helping one another is the best thing we can do. Finding new ways to live with these disease is what it’s all about now. So thank you guys and good luck and better living in 2010!!!
Hi Lori, Thanks. I agree “helping one another is the best thing…”
Good luck to you too.
Hello,
I don’t know where to start.I basically have NO support from my husband, which really hurts. At this point, I love him, but think I am remembering the past. We have two wonderful daughters, 10 and 12. They help around the house, but I can see they are starting to resent it. I do not want them growing up thinking of their mother as always ill and taking meds. My girls and I are very close and loving. They are the only reason I go on. It is at the point of my husband not wanting to hear anything related to my illness, and says “Thats ALL we talk about!” Which is not true. So, I have been withdrawing from him. I have been DX with RA, seronegative. Symptoms came on years ago, such as inflammed lungs twice a year, Dr’s assumed it was Pnemonia. In hospital, always gave me 100 mg of Prednisone, which after awhile I gained up to 60 pounds…and not eating at all. I hate Prednisone. Finally one morning, i woke up with stiff, sore finger joints, toe joints, lower back (sacroliliac joints mainly)lumbar lordosis had since I was 22 years old. Was in two abusive marriages, last husband was killed on job. Remarried year later to my brother-in-law (that I never knew) he helped me through all the horrible emotions, helped w/paperwork, talked me through all feelings/ turned out to be my bestfriend. Moved me into his condo to re-coup. I don’t think i ever re-couped, even though my late husband was abusive mainly when he drank, being a Vietman vet. Had his own “ghosts”. Anyway, in 2000, I was DX with Clinical Depression from all the violent things i had been through. My brain was depleted. Also DX of PTSD. Stress brings on past memories immediatly. DX of RA seronegative, Fibromyalgia, DDD, Lumbar Lordosis, Thoracic Kyphosis. Put on Mexatrexate (2009)10 mgs, any amt higher raised liver enzymes. Tried “Simponi”, newest TNF blocker. No relief, tried 7 months. Meanwhile, telling my Rhemy that my lower sacroiliac area, hip socket,rite side, down thigh, was extremely painful. scale 5/of 1 thru 5. He said” RA not go in spine. And passed it off. I am on OxyContin 40 slow release, 3 x day. Have RA fog,fatigue couple times month. Been known to sleep staight thru 3 days,2 nites. Rheumy gave samples of RX Nuvigil. Helped tremendously with getting me back to talking “intelligently” and not any 60 hr stints of “complete exhaustion”. Still, no reduction in inflammation….developed Pericarditis from constant inflammation. Not happy w/current Rheumy. Had to ask for Enbrel, auto-inject @ week for trial. Good news, 1st few days,seemed to be controlled somewhat. Even better news…Rheumy is leaving state,another will take his place. Only 2 in large county. Other one is retiring in yr. Never had support,no feedback,quiet North Korean young Dr./always glancing at watch. I NEED MORE HELP! I have two beautiful girls needing Mama. I have applied to SSD over a yr ago,jumped thru all hoops w/attorney, hearing is approx 5 months away. I need the money w/all my meds expensive. Just want to live my life w/my children/being able to go places/camping/walking trails/being “one” w/nature is better than any med available. I believe I have AS as well as OA (OA has been DX), current Dr is useless. My R hip,sacroiliac joints, R thigh are in constant pain even w/OxyContin. I limp when I walk. I made up my mind several weeks ago, I will still be active, and drag R leg if I have to. Tired of missing children’s events,etc. Hurts worse if I sit. Got to get my mind straight…would help if I had emotional support. Can anyone out there be my friend??? I promise I won’t whine or complain. Just need to share w/others in same boat.
I’m sorry to read what you have been through. I have been through some of these things too. Many others are also suffering in similar ways. Does it help to know you are not alone?
Just now I said a prayer for you – hoping you can find the right doctor & medicine. Have you ever looked for a support group? Sounds like what you need is a friend with RA. We’ll be glad to be your friends here, too. :heart:
You are among friends… we stand together not divided… most of us here have come and found this site as a last effort to trying ( I know I did) My outlook changed so much since reviewing all the posts i could grab and find there is still so much uplifting and rather just a another way to look at this thing we call different abilities.. We are all differently abled humans , its nice to know that a group of us here are similarly abled. When you reach the end of the rope , remember your still here fighting.. It does help to have companionship in the trenches..I have spinal stenosis, RA, Sjogrens, and fibro. and thats just the tip of the burg. It also helps to share with our loveds ones some of the truths on this web page.. to make it more a visable disease then it is otherwise stated in the world..
Helped my husband see that I was not just a slob faking it thru it opened his eyes to what other people go thru when im saying the same things taking the same meds.. I share all my medication warnings with hubby and do research which is my friend.. I continue to find hope and faith in this site, and pray you do
Hi whitetiger52, my name is Karaleigh (I’m the one in the picture for this AS blog), I am 26yrs old, married, three dogs (they are our children). I also have AS. I have in the past suffered from PTSD, currently Dx with Panic Disorder. I have a lot of trouble working, sleeping, controlling the pain and being able to be an active part of my own life. It has been wonderful to learn on this blog that I am not alone. There are so many wonderful and supportive people on here that have great ideas. We all are in the same boat whether RA, OA, AS, PA, FM, CF or JRA. We all are looking for that relief so we can be a part of our own lives. It can be really difficult sometimes but knowing that I am not alone does help, I hope you find it comforting too. I suggest keeping tabs on this blog, Kelly does update frequently, nearly daily. She has amazing information. It has really inspired me to be very proactive about my treatment. Additionally it has taught me a lot about the arthritic family diseases. I also have learned some great tips on managing life whether doing dishes or working in an office. The people on here are very resourceful and clever. Take care and best of wishes to you.
After reading this I’m a little confused and now alarmed. When I was trying to find a diagnosis 10 years ago, I was tested by my orthopeadic doc for AS and I did have the marker. He then sent me to a Rheumatologist that confirmed to me that I did have RA. I really didnt know there was much difference. I thought AS is just a form of RA and that’s that. My RA has been widespread in every joint, but the worst hit areas for me has been my spine,{I’ve had a C-spine fusion}, my feet and my SI joints. When I went to a new Rheumy a few years ago, he did the test again and found no marker. We could not find the results of the previous test. I just assumed I did not have AS after all. Recently, I’ve been having trouble breathing. I explain to the dr’s that it feels like a tight band is forming around my rib cage. I was sent to a pulmonologist and went through a series of test, all conclusive that my heart and lungs are in good shape. He does believe it is due to my RA, somehow. That’s great news, only I’m still having trouble breathing, especially after alot of exsertion. My symtoms sound like those of AS. Should I ask my Dr. to repeat the test? Do others with RA have this problem? Thanks for any help.
Hi Sharon,
There are genetic tests as you mention for both AS and RA. Maybe your doc will want to do that, but first – do you have a positive anti-CCP test? That is highly specific to RA and is almost “proof” of RA if we can ever get proof. It’s a simple blood test & I’d be surprised if you did not already have it in your records somewhere.
Of course we can’t tell what’s going on with your breathing problem / chest pain, but even if it is caused by RA, that doesn’t mean to let it go. It can be difficult, but I hope you can get a second opinion if you need it to get an answer. There are so many possibilities – like nodules in lungs or fluid or inflammed joints – whatever it is may still need to be addressed. Hope that helps a little.
Sorry, also whitetiger52, I’ve been in your situation and I know how painful it can be. Write me anytime on facebook or my email is terwoodbrown@aol.com. I’m sorry your feeling so alone and I’ll pray for God to give you comfort.
Various autoimmune diseases may be genetic and connected. I have ancestors with various diseases. I have RA and my sister has AK, as does her grandson. I have cousins with RA, too. Where does it stop? It’s a terrible thing to have these diseases run in your family and know that your children and grandchildren may be inflicted, too.
Anita
I agree. My family tree shows RA too. Sometimes, I worry about my children. But if they have one little sign, they’ll be seeking treatment immediately. Hopefully, it would never happen!
Whitetiger52, I’m praying for you.
You have a huge amount going on in your life, and it is good that you can recognize that you need help carrying the load. I’m praying that God will bring people alongside you to help you each step of the way in each circumstance.
God loves you, your daughters, and your husband. God wants His best for you, and He will work in your life in ways you could never imagine. Please trust Him with your heart, your pain, and your circumstances, and watch what He will do in your life. Reach out and ask for help from someone or a few people who you trust and respect, or even an assistance agency that can refer you to people who can help.
Even if that takes a lot of effort for you, do it anyway and don’t give up. Keep going forward. You are right, your daughters need their Mama. And God has a plan for a good future for you and your family.
Keep pressing forward, trust Him, pray, and go through the difficulties of asking for help and accepting help from others. You may think I’m being presumptuous and perhaps insensitive. But I am speaking from my own experience of watching God working things together for the good in my life and my family. Years of difficult circumstances and tears, but trusting, praying, and watching as step by step, day by day, minute by minute, God has provided His best for us.
God will provide His best for you, too. Many here are praying for you, and will be praying for you in the future. He has you here at this online community, and He has His people in your home community who will come alongside and help you each step of the way.
Trust in the Lord with all your heart, and lean not on your own understanding. Acknowledge Him in all your ways, and He will direct your path. (Proverb 3:5,6)
White tiger52-I’m so sorry you’re going through such a difficult time. There are so many that care about you so don’t give up. Just a couple of things to suggest-#1.- Individual/couple/family counseling helped myself and my husband tremendously to learn how to cope with the depression, anxiety, uncertainty,and stress that accompany these diseases(I’m also on an antidepressant). I have RA; and at times, have had severe sacroiliac inflammation helped a great deal by #2-steroid injections into those joints. I’ve also had pleuritis/pleurisy and pericarditis like you’ve described in your experiences. My heart goes out to you, and I just wanted to let you know you’re NOT alone. Also just wanted to relay a couple of things that helped me. If anything I’ve gone through can help someone else, I know that my suffering wasn’t done in vain then.I’ll keep you ,your husband, and family in my prayers.
Hi Julie,
Thank you for your reply. I’m sorry it took so long for me to go back to this website to see my replies. Sounds like we have a lot in common medically. I see you have been through pericarditis. Did it feel like your chest was caving in, and you could not catch your breath? My asthma was aggrevated by it. My PCP chose to get xray of my heart, lungs,ECG,sent me to a Cardiologist. With my symptoms, they wanted to make sure i had no CAD. So, had nuclear stress test with pharmaceticals. All clear, no blockages, but lots of dollars later, they did an ECHO which showed what was going on. Funny, the Cardio and I both thought because I had RA, it probably was Perio. It showed on the last test. with pleural effusion, which was shown on my first xray way back at my PCP’s before they did all this other nonsense. I come from a medical background. My father was a family doctor for a decade or so, but gave it up because of stress. Went to work for Lockheed. Anyway, my grandfather, (his father) and great grandfather, and great great grandfather, and great great great grandfather were surgeons. Boy was my grandfather angry at my father when he quit his practice!! Hee Hee. People have to do what makes them happy, not what makes other people including parents, happy. Anyway the point i was making was i grew up on medical books, anatomy, books books and more books. I cut my first teeth on medical books. I never had the time, the money to become a nurse or doctor. I did the next best thing. I worked in medical offices, and also medical insurance. I consider myself very knowledgable with the human body. I keep up on the newest things by reading as much articles as i can. Oh, my….I am not used to going on and on about myself. I am not trying to set myself up as higher than anyone else. I was curious to what your symptoms were with pericarditis. Mine, this time around, does not seem to want to go away. Look forward to hearing from you 😉
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My daughter has been diagnosed with AS, she is 19. She was dx when she was 17. I have RA, but I don’t have the gene for AS. Our Rheumy was kinda stumped about the fact that she has it but I don’t. I am terrified for my girl. She has so much trouble with her back, and has these spells where she has pain in the solar plexus area and it hurts to breathe. I think these are the flares. So far, if she takes a Medrol dose pack, it helps with the flare so she isn’t on any med all the time. I pray that it continues this way. She wants children, wants to be a nurse (is in college now), but I fear for her. She has a lot of sickness; colds, strep, mono etc. so she missed a ton of school in high school. She graduated however, but is having problems with college as well. And of course, everyone thinks she is lazy…just like with my RA. I am so sorry that she has ended up with this, and I feel responsible. I am so worried for her. :-(( :razzmad:
Raini, you aren’t responsible. You don’t even have the gene – & u cannot control your genes. Please give yourself some slack. At least you have each other to understand each other’s view – NOT lazy. My girls are 18 and 20.
My husband who is 65 yoa has had both ankylosing spondylitis and rheumatoid arthritis diagnosed in his 30s. He has also had a quadruple heart bypass 20 yrs ago. He now rides his bicycle 15-20 miles daily, averaging 350 miles a month, even in inclimate weather. As of late he has been experiencing increased pain in right elbow and hip. These current symptoms are affecting his daily routine as well as his bicyling. He has been taking Glucosamine-Chondroitin forumula for about four months now. There is nothing else new to his medication regimen. I would appreciate any and all input to my post. Thanks for the help. Sherry in TX
Hi everone,
I am rheumatoid/AS/lupus not sure according to my Rumi. I am 51 east indian living west coast. I started with back problems 10 years ago with + Rh factor, i was not diagnosed as rheumatoid until a year ago. I discs started melting and unable walk was bed ridden. Finally I got 3 level lumber fusion 4 years ago. I am better with back pain now.
I started joint swelling and pain 1 1/2 years ago.lungs and stomach issues and intense pain.
hey called it SJÖGREN’S my eyes are dry and has a ocular pressure
I tried Methroxate, short of breath, Ariva-nausea, Remicade –worked well for 3 months–last 2/3rds of hair. Now on Orencia 2 nd loading dose-awafylly tired, fast heartbeat and too tired. Do not know how this is going to go??
Just wanted to say hai for all he chronic sufferers–biologics gives hope, works for while for some people and longer people. I heard through a friend that estrogen works wonders for pain? i haven’t tried.
Madhug
Good luck with the Orencia. I hope you tell your doctor if your side effects don’t go away.
No, I have not heard that estrogen helps pain. It has not helped me.
@Sharon Brown, I have had Ankylosing Spondylitis for at least ten years now. At the onset it was horrific pain and terribly disabling, and then after 14 mos of disability I went into remission (i.e. could finally do my floor exercises again — stretches and back-strengthening daily exercises not unlike physical therapy,) resumed brisk walking and water aerobics, and rebuilt strength. Now, it is 8 years later, and I have been in a flare for the last eight months — and this time the AS is progressing rapidly. One of the things I noticed even a year ago was that my lungs made an involuntary noise while walking aerobically, and that I always wheeze when doing knee-to-chest exercises (daily). For the last 6 months I have felt that my chest is constricted. The area in front and behind my lungs, as well as the shoulder blades, is affected. When my esophagus, throat and uvula became involved with the too-tight, constricted feelings, I knew I had to seek another rheumatologist (mine moved out of state years ago.) I have also been belching ridiculously for the last 15 months — it’s just air but can go on indefinitely; this is something I’ve never done in my entire life!
My GP tested me for asthma and I tested positive, but have none in my family, and the albuterol didn’t make a huge change. Next I went to a rheumatologist who treated me like a whining 40-something female experiencing the change of life, and said I did not have AS, and to stop worrying myself by looking on the internet. (!!) The first rheumatologist who originally introduced me to the very TERM Ankylosing Spondylitis was wonderfully thorough, knowledgable, and supportive. I was chagrined to see him move.
All of my joints are affected by the AS at this point, (low back, hips, sacral joints, shoulder blade area, neck, shoulders, elbows, wrists, hands, feet, knees, pinky toes, as well as my eyes aching all the time,) and my fatigue is so severe I am only able to work and sleep, nothing more. I nap at lunch time and immediately after work. I sought treatment from a Cleveland Clinic rheumatologist several months ago, who put me on Remicaid. I noticed by the end of the first two weeks that the pressure on my lungs and chest, as well as the esophagus pressure and belching, was gradually subsiding! I encourage you to seek further treatment from a rheumatologist familiar with A.S.!! Had I stopped after Dr. Cold, I would believe that nothing was medically wrong; I was simply a total weenie who didn’t have enough energy to live her life — and my disease would be progressing without restraint. It is hard not to feel bitter about Dr. Cold. A rheumatologist holds so much power in his hands in the way he treats those with invisible, but disabling, diseases!!!!!
I’ve been having RA symptoms for a year and a half now. I do have the HLA-B27 gene, but show no evidence in my low back/hip x-ray. I have a slightly elevated RA factor, but the other bloodwork is normal. A few weeks ago, my ‘normal’ low back pain became severe. It moved to my butt and the leg pain got much worse (as did the feet, etc, numbness, etc.). My MRI showed no herniations, just some degeneration. I’ve already had disc replacement in C5/6 and so I know my spine isn’t ‘healthy’. I also have scoliosis that somehow became painful after pregnancy.
My dr can’t diagnosis me with RA (yet?), but is treating me with Plaquenil to sort of see what happens. (i’ve had to stop taking it due to some strange vision issues– i’m terrified of this side effect- yes i do plan to ask for a med change) (thankfully, i’m not in a hurry due to the steroids and narcotics prescribed for my low back- i’m functioning!)
I’m wondering for those with AS (or RA- since we know it does affect the spine)– how long did the x-rays catch up with the pain?
In the meantime, I’m trying out a chiropractor to try to get ‘straightened up’ and help with the hip, low back, mid back, and neck pain.
Deven, I think your hunch is right about xrays having to catch up since they only show damage that’s very obvious that has already occured. Since damage can occur quickly or gradually, I wonder whether there’s a clear answer that would apply to all of us. Probably not.
And please be careful w/ chiropractic w/ having some type of degenerative disease in the spine. There can be instability which is dangerous in certain joints since it can lead to inpingement of spinal cord. Please see last paragraph here. This might not affect you, but it’s good to know what the risks are.
My son Michael is 14 and has both juvenile rheumatoid arthritis and ankylosing spondylitis. He has gone through hell with both of these. Right now his JRA is fairly under control but his AS is out of control. There is not a day that goes by that he is not suffering. He is active in sports and plays despite the severe pain. As a parent I am at a loss on how to help him. It is my job to protect him but I can’t protect him from the pain and suffering. Michael is my inspiration. Even though he suffers daily, he does not let it slow him down…
Thanks for posting, Heidi. Go MICHAEL! He might want to watch the video about Grant on the bulletin board – click here.
Thanks for the information on AS. My rheumy is wavering between an RA/AS diagnoses, and right now has me on Simponi and Sulfasalazine, as they are supposed to be effective for both. I would love to hear from other women who have this disease. I’ve checked traditional support groups, and those for AS tend to be full of men.
Your site is wonderful, it’s really hard to make your friends and family to understand that while I may look the same/ albeit more tired and older, my body may never be the same as it was. God bless, Gay Nell
Gay, we have some good friends in our community who have AS, so I hope you know you’re welcome no matter what your diagnosis is.
interesting, I have been diagnosed with ankylosing spondylitis, rheumatoid arthritis, fibromyalgia, dactylitis, psoriatic arthritis, osteoarthritis, chronic fatique, dddegeneration, and periphial arthritis. I am affected from head to toe. I left work in 2002, and still working on getting disability. I am trying to figure out which one is most painful. I get to relax a bit with medicines but I never lose the pain or discomfort.
Hi guys~
I have just been diagnosed with Ankylosing Spondylolysthesis about 2 weeks ago. I am trying to get as much info as I can about this disease. Does anyone have any ideas? I am also trying to find out if there is any kind of state help that I should be looking for? I need some help. Thanks again~
I’m not aware of state help unless you mean filing for disability which is a long process to receive assistance and medical care.
My best advice is to keep researching and don’t stop looking for answers. They do not have treatments that work on everyone with these diseases. It is learn as you go and you must learn to advocate for yourself. Also, read thru your medical chart, the doctors’ notes, and the lab tests. Gradually, you will realize whether your doctor is hearing you and you are on the same page and getting the best care possible. They should discuss new treatment options with you and decide together. Good luck to you Laurel!!
I am a 35 yr old women was recently diagnosed with RA I was diagnosed with fibromyalgia a few years ago along with ibs and I haved an anxiety disorder but I think it all started when I got mrsa in 2008 now I am engaged to a man who has a form of muscular dystrophy. And I am his main care provider which is really hard I don’t know how to get the help I need let alone get help for him does anyone have suggestions? ?
Any suggestions are greatly appreciated I feel alone overwhelmed and frusterated…
I have RA, OA, AS and Fibro. Diabetes, mild asthma and a host of other crap. I am so WEARY of Docs that asume that I am exhibiting Mucheons ( bad speller ) disease and assume that I am nuts. I have MRI’s, a medical file that could fell a strong mule and a real distaste for stupid in the medical professionals dept. As sson as you walk in, they send you off to yet another specialist and never communicate with each other. So each Doc has info on a separate disease issue and none know all of it. How does that make sense to anyone?
I love your articles and comments. I have just seen a rheumatologist for the first time with tests and symptoms of RA or AS. I am a former college basketball player and dancer who already had wear and tear issues but my brother has had ulcerative colitis and now has severe gout. My father had polymyalgia rheumatica and my my mother developed diabetes and does not eat sweets and has always stayed fit even in her 70s. So there is a strong probablity for inflammatory disease for me.
I wanted to correct that AS also affects the heart like RA. My rheumatologist is also has a degree in internal medicine and he told me that despite a positive rheumatoid factor that my symptoms are more in line with AS due to heel pain and morning stiffness and hip problems. My shoulders pop along with my hip and feet. People actually hear it now pretty frequently.
I went in a year in a half from a blood pressure of 100/70 to 110/60 at each doctor’s visit to blood pressure of 145/95. Whether I have AS, RA along with my osteoarthritis, both can affect the heart.
It’s funny. I read the comments now on the sights and had no idea how many people suffer each day quietly and alone. I pray each person finds hope and understanding. I have two small children in my forties and would trade any great accomplishment just to be able to push them on their bike while they learn to ride.
Thank you for taking all this time to creat a sight where people can come together and share their stories. I find that others are as unconcerned as I use to be about these diseases. It teaches you to be compassionate and listen to others. God wants to humble us to serve others. You have choosen to be better and not bitter. God Bless You and Carpe Diem!
LongTallMom
Hoping to find some answers. I’m at the very beginning of this road you all have been on, and am looking for some wisdom and clarity. About two months ago I suspected I may have RA, made an appt. with a rheumatologist and had blood work done. My rheumatoid factor was high and HLA-B27 was positive, everything else was normal. I have ADD and with it comes a hyperfocus that can search the Internet for hours and yet I cannot find an answer to my question. So here goes…Despite my being pretty laid back, all info. on RA said to treat early and aggressively. I’m an artist, my hands and vision are really important to me and I had enough going on to check, but reality is my worst pain is in my lower back. I’ve learned this is due to inflammation, because it hurts at rest (can hardly sleep some nights) and resolves with movement. Everywhere I had read stated that RA did not affect the mid/lower spine, so I never mentioned my back pain to the rheumatologist. Sooo is it possible to have a high positive RF and have AS, even though AS is classified a seronegative disease? Thank you in advance for any insight.
Also, Kelly and all who contribute, this site has been an incredible resource and blessing. Without it, I would have doubted myself and most likely missed the early intervention I’m now receiving. I’ll surely submit my onset story, once I figure out what has onset me : /, because they were especially helpful. I’ve never fit the average and am always the exception, so having MANY stories to examine, many symptoms, many combinations of symptoms and timing gave me the confidence to check. Thanks!
Hello everyone,
I’m have been recently diagnosed with AS. I start my humira as soon as my TB test comes back. I have been fighting for a diagnosis for 10+ years. I have a very high RF, high CRP and a off the charts CCP along with measurable bone changes of the hip, spine, knee, feet, and shoulders. My doctor decided on the diagnosis of AS due to the bone changes and the symptoms but I also have the blood work and symptoms of RA. I’m also HLA-B27+ and my father has both RA and AS. Lupus also runs in my family on my moms side. I’m 33 years old and have always been told you are too young to have these problems or are you sure you are not making this up. It gets tiring, having to explain to your doctors, family, and friends that you believe you have something going on and no one believes you. They look at you like you are bonkers. Previously my blood work and X-rays showed nothing out of the ordinary. Just this past year and a half, things really took a turn. All of a sudden I had unbearable and crushing pain at night. My morning stiffness hit me tenfold. The swelling seems to be everywhere. And my shoulder, elbow, and wrist on my right side always feels sore, swollen, and refuses to work right. Everything hurts! None of the regular pain killers helped but gave me tons of side effects. Which I cannot have in my line of work. So I decided to live with the pain and try to grin and bear it. I knew I would later regret not pushing for some help. After about 6 months of my grin and bear it plan I broke down and made an appt. with my newly appointed doctor. I didn’t hold much hope. But I was surprised. He took me seriously and told me I needed a rheumatologist. And the rest is history. Now I’m just waiting to get my humira and I hope it helps. For those who waiting for a diagnosis: Don’t Give Up! For those of us that are starting out on treatment or already on it: Keep Fighting!
Really interesting article
Hello, I was just wondering if anyone knows whether having a cousin with Crohn’s Disease and AS would make me at higher risk of having AS. I also have Crohn’s Disease. I have had problems with my lower back, in between shoulder blades, and neck area for years. I have also had off and on issues with ankles, knees, big toe joint, and a few knuckle joints. I always have sore eyes that feel inflamed. I have been having a lot of issues with bowel & bladder function for quite awhile and am now having issues with the sacrealic joints & hip area. My gastroenterologist says finally now after being diagnosed with mechanical back pain for years that I might have sacrioliitis or even worse possibly AS.
Carla, I think having any of these immune system diseases increases your risk of having another one. Also family members with a diagnosis could mean you are more likely to have a gene combination making you susceptible.
I found out I had as after experiencing what felt like ovary pains in one side of my tummy for ages. Aside from that, the key symptoms were progressively worsening stiffness. Its easy to miss if you work a desk job or something similar, where you often feel that way. But at some point (1 year or so before diagnosis) I realized that stretching out was more painful than staying locked up in the stiff ‘my shoulders hurt from working’ posture. That’s AS in progressive mode. Only moving around a lot – and resting – makes it regress again.
But I wouldn’t have found it at all if I wouldn’t have gone to my Dr. many, many times. Don’t give up: AS can cause a lot of complications if you have it, and in most cases its just an Xray test to see if you’ve got it. Chronic pain doesn’t go away if you/your Dr. ignores it!
I was Diagnosed with severe AS when I was 32 I am now 56 and it is hitting me even harder but I am getting hit with bouts of cellulitis frequently this last December I almost lost my life to Pneumonia
and severe Cellulitis I was septic and stage 3 organ failure. I am a walking Miracle they say I am now 100 percent fine but today I went to see the doctor bam lower leg Cellulitis again! What is causing this and does AS/RA and Cellulitis go hand in hand?
When I was in my early 20’s I had hip and back pain to the point where I could barely walk or function without using a cane and was in so much pain that I was hospitalized. This was in the 70’s and the doctors had the nerve to tell me it was all in my head! I was furious and humiliated. It seemed to come and go over a period of months. I got active again, riding horses, swimming and cross country skiiing. I found it took my body awhile to acclimate to the activity, and I found I needed to be consistent, because it would hurt if I would suddenly stop my activities. It wasn’t until the early 80’s that the night pain became unbearable and I slept very little. I saw an Orthopoedic surgeon who took X-rays and administered the HLB27 blood test and determined That I had AS. I smiled and cried with relief, and felt vindicated that I was NOT a nut case or a hypochondriac!! As a cathartic, I wrote the doctor who had originally treated me telling him how wrong he was. When I told my current Doctor About my activities, he thought I was biting off more than I could chew, and wished me good luck! For awhile, I was initially on Indomethacin, but I hated the way it made me feel so I stopped taking it. 30 years later I still take nothing except Advil once in a great while. I still ride horses, motorcycles, etc. I think being as active as you can is the best medicine. It has quieted down in my back and hip unless I over do it, usually raking leaves, shoveling snow, raking garden soil. It has spread to my knees, wrists, lower thum joint and shoulders. I occasionally get uveitis. The best medicine of all was buying a waterbed decades ago. It improved my sleep dramatically, I need support without pressure points. Shedding some extra pounds has really helped. Over the past year I cut out wheat products, almost eliminated sugar and “bad” carbs, resulting in dramatic improvement from inflammation. I have heard wonderful things about turmeric and am going to try that. I thank God that I have had a quality life without poisoning my body with nasty drugs. I feel pretty lucky. Just wanted to share my good story.